Cancer Patient Finds Support, Empowerment Online

When Geri Malter was diagnosed with a retroperitoneal liposarcoma (a rare kind of tumor in the fatty tissues of the abdomen) in 1983, her first thought was, "I need to talk to someone else with this kind of cancer." Unfortunately, it was eight years before Malter met another liposarcoma patient.

In the meantime, Malter tried to educate herself about her disease and about the world of cancer. "I needed to be able to really talk to my doctors," Malter said. She enlisted the help of her husband, a physician, who gathered material on liposarcoma at medical libraries. According to Malter, information was sparse.

She also sought emotional assistance, requesting information about support groups from her health care team. "They told me, ‘There are no support groups for people with your kind of cancer,'" Malter remembers. "They said, ‘There are only support groups for women with breast cancer.'" When her tumor recurred in 1991, Malter was still seeking the kind of support she believes can only be found from others dealing with cancer, specifically liposarcoma.

"Dealing with a rare cancer is very frustrating," she said. "It's very scary and it makes you upset. It can make you lose hope."

Five years ago, Malter gained access to the Internet in her home. She immediately began searching for information on liposarcoma and for others living with the disease. "It was the first thing I started to do when I got a computer," she said.

The Benefits of Online Support

Kevin Wright, Ph.D., a researcher at the University of Memphis, has studied online groups that deal with cancer. Wright, whose mother's death of breast cancer several years ago sparked his interest in online support for cancer patients, has found numerous benefits in online support. “Online communication allows people to interact with a diverse network of people dealing with similar issues,” Wright said.

“In our face-to-face networks, we tend to communicate with people who are very similar to us. But when we are faced with an issue such as cancer, we may find that people in our closest networks may no longer be able to identify with what we are facing on an emotional level.”

According to Wright, privacy is another important benefit of online support. “Other benefits include the ability to safely disclose information to people who are removed from someone's primary social network. Years ago, communication scholars found that people typically will only disclose sensitive information when they know people extremely well. However, there is one exception. For example, sometimes when people meet others on airplanes, buses, etc., they will disclose highly sensitive and intimate information since there is little risk that they will see the person again.”

Wright continued, “The same thing is true in online support groups. If you are taking to an anonymous person with cancer who lives on the other side of the country, it is doubtful that you will ever meet this person face-to-face. People in online groups have mentioned to me in my studies that they like the ability to disclose sensitive information about themselves in a relatively risk-free environment.”

Online support groups are, Wright noted, “relatively risk-free environments.” He said cancer patients can “sound off about problems without feeling like they are placing an excessive burden on others.” The researcher believes that “the opposite seems to be true in closer face-to-face networks.”

Finally, Wright said the Internet provides cancer patients with a “vast deal of informational support. For example, if you pose a question or concern on a message board, you may receive a great deal of information – personal experience and links to professional websites, information, etc.”

Ultimately, Wright said he believes people with cancer who seek support online are “looking for people with similar problems who will understand their feelings and concerns.”

Knowing How to Navigate:  Where to Look and What to Look Out for

Just as her 17 years of living with cancer have helped her learn what she wants and needs from her health care team, her five years of using the Internet as a means of support and education have made Geri Malter somewhat of an expert in online navigation. The Newton, Massachusetts resident knows what to look for and where. She is a member of a liposarcoma listserv, through which she can communicate with liposarcoma patients throughout the country and the world.

Through the listserv, Malter has located what she calls her "cyber support group," which includes roughly 40 people living and dealing with the disease. "There is no way this would have happened without the Internet," Malter said. She feels her lengthy fight against cancer enables her to provide support to those newly diagnosed. "I feel I'm helping other people," Malter noted.

In addition, she believes the Internet allows people to educate themselves at their own speed. "It's right there in your house. It's so easy. You can do it in the privacy of your own home—take notes, print information out," she said. Those who do not have Internet access in their homes may be able to take advantage of hospital resource centers, Malter said. Education, Malter believes, is crucial in an individual's fight against cancer. "The more you know," she said, "the more control you have. Empowering the patient is very important."

Malter's doctor, George Demetri, Medical Director of the Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Institute and Harvard Medical School, agrees with her. "Patients can educate themselves at their own speed and customize an educational program, as long as the reliable and trustworthy information and tools are accessible on the Internet," Demetri said. He also believes the Internet can aid people living in places where they may not have access to a major cancer center, especially people dealing with a rare cancer such as a sarcoma.

"There are simply not that many centers which specialize in the care and treatment of patients with sarcomas. The Internet can bring, at least in part, some of that expertise to the patient and to concerned family members with an immediacy that is vitally important to support optimal decision-making and choices on behalf of the patient, her or his family, and local physicians," Demetri said.

Although there is a wealth of information about cancer available online, Demetri and Malter agree that it is essential to use only reliable sources. Malter said, in beginning an Internet search, people should consider consulting the sites of major cancer centers and cancer organizations, such as the National Cancer Institute. She also suggests doing a general search online by typing in the kind of cancer on any search engine, but warns against "anything that says they have ‘the cure.'"

Demetri's advice? "Let the reader beware. It is important to check the credentials of the people or companies behind websites," he said. "Well-respected professionals, professional societies, or publishing firms with a solid track record in healthcare information are the best bets."

Malter urges patients who consult the Internet to discuss what they have learned with their health care teams. "Your best source of information is your doctor," Malter noted. "But if you get information from somewhere else and have questions, go back to your doctor and ask those questions."

Echoing his patient's belief, Demetri suggests patients talk about the Internet sites they have visited with their doctors and nurses. "Often, it is a good idea to discuss the quality of a site with one's own healthcare team to get their input into a site. My patients ask me that all the time, and I am happy to comment on that for them."

Malter has not been tumor-free since 1991 and has undergone 14 surgeries, as well as radiation and chemotherapy to treat her liposarcoma. In her 17 years of living with cancer, she has transformed from someone who "was not outspoken at all," to who she is today.

"Cancer has made me a lot more outgoing, eager to speak up, be more assertive and not be afraid to express my opinions," Malter said. "I was not like this at first. It's been a real evolution. It would be impossible to tell someone who has just gotten a cancer diagnosis, ‘Act like this.'"

She continued, "I just look at life completely differently than I used to. I try not to dwell on the little things," she said. "I think, ‘Gosh, how could people be worrying about what kind of shoes they'll be wearing Saturday night?'"

Aside from advocating for her own health, Malter volunteers her time at the Dana Farber Cancer Center, where she edits a quarterly newsletter. She also serves as co-chair of the Patient Family Advisory Council, an organization that acts as a liaison between patients and their families and hospital administration.